Improvement but little steps....

Keifer's heart rate was 198 for hours ... finally down to about 110 but when he coughs on phlegm it goes up to 140 range. Also his oxygen when coughing is 70 with oxygen in his nose at a 2 but they turn it up to 4 and he stables out at 85ish .. so now down to a 2 again. Thomas is on nonstop .... he still refuses to eat or drink. The fluid build up is something called pleural effusion ... A pleural effusion is a buildup of extra fluid in the pleural space, which is the space between the edge of the lungs and the chest wall. Then Dr. said something about it coming from his lymph nodes and it is common from surgery but not as common to keep secreting this liquid so much for so long.They drained a lot of fluid so far and his stats are improving but go up and down ... and they are trying to wean him off oxygen tonight.He had really labored breathing with a grunt noise he made every breath .. it subsided while he slept earlier but now he is awake it is back again. With each new Dr. and nurse and RT and everyone when shift changes I have to repeat our entire story , symptoms and causes ... gets very annoying .. and we all know I dont get annoyed easily right? Fluid that drained off is up to 700 ML so far .....

Keifer back in ICU

I knew yesterday that he was not progressing .... he only had one bite of food and little to drink. He tells us now that he doesnt want anything because it will make him throw up ... the phlegm is what he is talking about. About 10p last night he ran a fever of 102.2 ... Keifer has never had a fever that high... he rarely ever gets any fever. I left message for cardiologist to call us back and packed our bags while I waited..... and  he said go back to ER at Medical City so here we are ..... we didnt get into a room until about 4am ... they first thought it was pneumonia but now say it is fluid built up outside his right lung. The plan is sedate him and insert a new chest tube to drain the fluid ...... so im eating breakfast now and waiting for them to finish.... they told me it was going to be after rounds and changed it to before rounds.. so Keith didnt make it back up here. I will update as soon as I know more.....

this was in the ER at 3am

First week home

We have been home now for a week. Keifer is ok but its still a struggle on meds, drinking and eating. I called cardiologist and may take him to see her on mon or tue ...we do have appt right now on fri jul 5. Keifer got some very cool stuff in the mail..... Jennifer sent him a Monster Inc Build A Bear and a beach towel ...very cool....thanks Jennifer and some of my coworkers in Argentina sent cards for Keifer complete with translations...lol...thank you Isabel. I will update again after I taker Keifer to Dr. soon. Thanks everyone.....

Glad to be home ...

Keifer is doing ok .... thanks for checking on him .... I still struggle with getting him to eat .... he will drink some juice and milk and water. He will eat once or twice a day .. some of it comes up .. he coughs on and off .. some junk comes up as well. Overall he is ok ..... will be back to see cardiologist in the next 10 days. More pics soon....

Guess where we are .. look at pic below

We are home !!!!! after 10 long days ............ finally ..... we are so happy. We are going to take some time to relax and spend some family time together. Hope everyone has a good weekend and I will update tomorrow ... more pics below ...... enjoy

Another night........

We are here still ..... the only thing keeping us now is his potassium is at a 2.3 which is very low and scares me and a little low on sodium/electrolytes. He did eat some of a Happy Meal his dad brought him last night. Today he has had chicken strips and kept down so far. One dose of potassium came up with a little blood and second dose later today so far he has kept down ... last resort will be IV. He has walked several times , been to playroom , rides in the wagon, gift shop and taco place. I got his Beads of Courage updated from his first open heart surgery when he was born and next I have to do his second surgery ... starting to be a really long necklace.

 

P.S. the nurse just came in and said lab work this evening shows potassium is 3.8 ... this is acceptable range ... so still trying to get home tomorrow...........

 

My public service announcement

I have struggled with this post tonight ... some of you wont like this ..... but I have to do this for me and my family ..... because this is about us and not anyone else. I will only speak of this one time and one time only...... and I will name no names. My #1 priority is my immediate family .. those who live with me .. my kids and husband ...... IF .. anyone can not understand that ... not my problem. Before you call or text me with a complaint or negativity think long and hard about doing that. While I am here 45 mins away from home and my other children and husband ... caring for my baby around the clock nonstop .... pushing him to eat, cleaning him up after vomiting, making him take meds, worrying about his health not to mention trying to take care of myself and then running my household by text.............think twice before you contact me. Now for what should be the focus here is Keifer .... he did eat some Happy Meal tonight from McDonalds....that is a little improvement.... and now I am done for tonight.

Never ending roller coaster .........

Good thing I like roller coasters and not afraid of them. Keifer has taken a few bits of food and had some chocolate milk. He had a chest xray today that came out good and his blood work came back with potassium a little low and sodium..... so meds today and he had to take potassium orally ..... for those who remember I had to take potassium last year after my relapse from surgery ... it made me sick and had to switch to IV ... yeah he is just like his mother .... I held him down(fun) and nurse used a syringe and gave it to him .... he threw most of it up. Dr. came around and said it could be 2-3 more days ...... devastated. They are not concerned right now with food intake ... it is common after his surgery to not want to eat for a while he is drinking enough to stay hydrated and they check his blood work daily. History shows that they eat when they are ready and usually after they get home. He has walked three times today already mostly at his request. We received a wonderful gift in the mail from a coworker in LAX that saw my posts on our work website ... a huge Thomas book with stickers and two very sweet cards to each of us..... thank you very much!! Also you can send Keifer mail here at hospital by email ... here is the link ... write in a message and send it and they will print it out and deliver it to our room .. we got one today from Jennifer and family .... thanks for the nice surprise !!
http://www.mcchildrenshospital.com/parents-a-family/send-e-mail-to-a-patient Here are some new pics below........

not enough things in the bed

Seeing this little red light during the night is comforting.

One foot out the door !!!!!!!!!!!!!

We are out of ICU !!!!! Now in the step down unit.... not as bad as last time I remember being here .. 4 doors down from a friend too. The up side is we have our own private bathroom/shower and I can eat in the room and talk on the phone. Only downside .. I cant leave him ... so I cant do all my walking right now. He has had a few little bites of food but mostly just water is what he wants. He walked down to play room... swayed a lot and they have a train table and lots of Thomas stuff.... but he had no strength left to play. They said the fluid buildup disappeared overnight. His numbers are all good .. he got the last chest tube out .. and his pic line ... he is down to one IV which is required for heart patients to keep in while here. Was told he will not go home tomorrow .. will be switching to oral meds tomorrow .. so earliest would be Friday.... cross our fingers ... Momma ready to go home !!!

Leaving the CHSU

New Room and playroom visit

One chest tube out ...

After getting no sleep last night .... when we finally settled down about 430am .. at 5am the surgeon's nurse Kathy came in and took out one of the chest tubes ..... painful ... stitches ... even with morphine.... we then slept for a few hours. He has walked twice today(me too).... even got some M&M's .. his favorite thing in the world .... no eat. There is still some fluid buildup so new diuretics
were ordered and another night in ICU. Waiting on his Dad to get here and bring him a baby cup(sippy cup) at Keifer's request. Thank you for all your comments, texts, messages and phone calls about last post. I had a dinner date but he is working late, feed other kids , shower and then come up here.........may have to cancel dinner..... that's ok... it's how we roll.....

A title I don't want to have ............

I hear Supermom .. Superwoman  sometimes ....  how do I do it .. I seem to handle it all and I'm expected to do so by some. I am not a supermom or superwoman ...I am just me ... and I do what needs to be done .. even it means I do things some people don't like. Really I don't know how this all happened ... or what it means .. or why me ?  I once read a post on a fellow heart moms facebook page .. I wish I would have saved it .... it talked about why we were chosen for this ..... and was something about .. maybe we were chosen to go through this to be an example to others how to handle it ...... that hit me ... maybe I am an example ?  Another post I read was a poem about how babies in heaven are sent down to their parents and how the heart babies have specially chosen parents.... and this baby cried and told God he didn't want to leave him ... and God said .. it's ok ...
I will keep here half of your heart with me and when you get back I will make it whole again..... God also assures the baby that there will be surgeons and doctors and nurses that will help him until its time to come back.... he tells him.. your mommy and daddy will be sad sometimes but happy to have you and will love you deeply ..... the poem went on to talk about how one of the things he looks for in a heart mom is selfishness .... because the heart mom needs to be a little selfish .. so she will take time for herself so she can handle everything going on........ that's me.....I have to have some me time....to keep sane and it renews my focus to try harder. For those of you that know me we have three major medical issues in our house.. Keifer's heart is only one of them. I am not perfect by far ... I make many mistakes ... I do a lot of good stuff too... I can piss someone off just as fast as I can show them love.... I withdraw from people when there is a lot going on and I need my friends to keep me in the real world. No one can understand unless you walk in my shoes .. with the exception of those going thru the same. I don't expect everyone to understand ..  but also don't expect anymore of me than I can give each of you...........you may not hear from me for weeks .. I may forget important events or birthdays... texting is the best way for me to communicate. So when you think Supermom .. Superwoman .... remember ... I would trade it all in a heartbeat for just ...... MOM .....


P.S.    I'm able to do it all because I don't have time to clean my house !! and no one bring that up to Keith please !!! it's a sore subject ...lol

bed full of thomas

Spoke to soon

Scratch that agenda for today .... the chest tube started draining again more blood and clots .. so they left it in ..... he walked twice today ... ate a little pepperoni pizza .. I mean little pieces. They may send us to step down as early as tomorrow..... yuck. We are spoiled in ICU.... nothing else compares. I just want to go home .. Keifer too. But tomorrow is day 6 of our stay with at least being here till wed or later ... no time frame has been discussed at the moment. Thank you for all the ones who I have heard from .. all texts and messages are appreciated.... and then they are some who I have never heard from..... troubling but it always happens ..... these are times you know who you real friends truly are .. the ones who take the time to check on us and their kind messages.... you all know who you are....

Todays Agenda

Don't get too excited when I say he ate ... that means he ate one time a few bites .... last night I got him only to eat 2 small green beans and 2 bites of crackers. He still refuses food 99% of the time .. he does drink apple juice. He got another bath last night and he asked me to sing to him... I'm like Frank Ocean or JT ?? no .. he said twinkle twinkle little star ... and abc's....lol. Today the plan is more walking .. he already did some this morning .... in protest and frowning.... one drainage tube in chest will come out and he will have an echo. Im hoping we can stay in ICU as long as we can .. possible go home from here .. Im told it happens sometimes .... I do not want to go to step down on 6th floor ... its horrible ... I hated it last time and my fellow moms with kids here will agree .. for some reason its not comparable care to other hospital step downs. I'll update later as things progress... no pics right now..... take care everyone.

Happy Fathers Day

Heart dads are extra special. When you have a heart child ... there is lots of stress, worry, expense, sacrifice and joy. I'm sorry he has to spend fathers day in hospital but I did take him out for lunch at a nice little Mexican food place across from hospital while Bre stayed with Keifer. And ..... while we were at lunch ...Keifer ate food !!!!!!!   Last night he finally told the nurse and I that he was in pain after screaming  it. She gave him oxycontin.... and  for a little while Keifer was himself... he sat up in bed and he told the nurse all about our house and his siblings and his toys .. he even invited her to our house to play with his Thomas train table...and all in a very sweet voice ... we both were tickled. Then today .... cardiac recovery therapist came by and got him to walk .... he did it and back to chair and sit up ..I read him a Thomas book and then I gave him a Thomas coloring book with marker and he colored in it and talked a lot and he told his dad happy fathers day when he got here. He ate green beans and mac n cheese and hasn't thrown anything up today. New pics below .. enjoy...

no changes .. but saw something I hope we never have to see

Keifer has been sleeping on and off  most of the day .. still just sipping juice .. no food. Still not wanting to talk or eat. Sat up in a chair for a little bit. I found a walk/run/bike trail across the street.... so I went for my walk and on the way back I saw care flight landing .... the helipad is right outside our window also. I know several moms who their kids have been brought here on one.... I hope we never have to use it..... luckily we are two blocks from a helipad at home. On a different note one of his daycare friends mom came by to visit .. Katie .. and at my request she brought some cupcakes ... someon in lobby left their food and a cupcake on the only table ... and another woman .. a grandmother saw the cupcake and rushed over thinking someone left a bunch of cupcakes for people in waiting room .. she was very disappointed and told me how much she liked them ... I then helped her get connected to internet and we had a nice talk .... I shared Keifer's blog with her and told her how she could make one. I texted Katie ... please bring some cupcakes .. and she did !! I gave one to the nice lady and she was very happy .. I had one too.... and gave the rest to nurses.... good night...

One step forward .... two steps back....

That's just how these things go..... get worse before you get better. We both got sleep last night for the first time ! We noticed that starting yesterday he became very calm and stopped talking. He did talk a little when his sister came in and he let me read him a Thomas book that he helped with. But mostly for past 24 hrs .. no talking and almost kinda sad. He also can't keep anything down today.... he has been throwing up everything he drinks .. and there is old blood and bright red blood in it. First today they put a cath in one of his drainage tubes and inflated a balloon up in it to draw out blood that was clotting and not draining properly. I left for that and went for my walk and coffee .... I was torn to stay but sometimes he takes things better if he can't see me. When I came back I couldn't get buzzed in the door. I tried for over an hour ... finally someone came out and we went in ... I spoke to nurses and they apologized many times ... the bell was broken on door. Makes you very anxious because they told me before ... if you can't get in there is something major happening .. but don't worry unless we call you .. if we don't call you .. it's not your child.... as my phones battery went out during my wait. They gave him meds to help the throwing up .. he still wont eat .... he sat in a chair and took two steps between bed and chair... and now asleep. New pics below.....

He got his wish .............

Keifer got a sponge bath and  got his bed fixed up with a new dinosaur blanket and Lisa brought his blanket from daycare . So while nurse was getting bed ready ......... I got to hold him. I picked him up and held him in my lap in a chair. He looked up into my face and melted right into me with a sigh of relief........

Friends, Food and a little Fun

I have a feeling Keifer is going to mix up his days and nights now.... he has been sleeping most of the afternoon and early evening. Lovely!!!! and I'm wide awake !! Had a semi-surprise visit from my BFF coworker ... I say semi because she got lost .. and had to call and get help here ..... LOL. Thank you Cherrylynn. As I walked her out we took pics in the atrium ... see below ...note I have no flat iron and not much makeup on. I got to visit a little with fellow support group mom Scarlet on the 6th floor and I met a new friend thru another friend that is also on 6th floor and her daughter is the opposite of Keifer she is hypoplastic left heart. Love to meet new people. Now Lisa is here and she brought me homemade lasagna and some gifts for Keifer and a charger. She will relieve me and I am going for a long walk.

my workout ... stairs

Dr. M .. two cuties !!

and he is up ....... kinda

After being up almost the entire night ..... he slept on and off all morning ... while I was awake .... !!
Took me two hour wait for shower on 6th floor but well worth it. Went on a morning walk for an hour and to Starbucks. Then the cardiac recovery therapist came knocking on our door. Keifer has been begging to get out of bed but suddenly he changed his mind..... I think he sensed what was coming. He screamed most of the time ... it was a big ordeal to get all the drainage tubes, oxygen, wires and IV's all mobile. They had these too big slipper socks you will see on his feet in pic below. Got him to his feet standing with me on one side ... Keith on the other .. and therapist behind him dragging all the equipment. The incentive was a play room with a big treasure chest he could get a toy out of. He made it most of the way and finally sat on the floor and they pushed the treasure chest to him and he couldn't even pick out a toy .. I sat by him on the floor and he laid his head down on my leg. We got him back up and made him walk back to room where he sat up in a chair for a while but was very worn out. Get to do it all over again later ... after mommy gets some valium from Ms. Lisa. Keifer got some new PJ's from a wonderful organization called Sweet Dreams for Kids ... look them up on Facebook. Update again later today........

Rocky night

It's been a little rough last few hours.... but still within normal range of what they expect. He has some extra fluid in him that's slow coming out and wants to drink juice badly so they have upped his meds to flush him out to allow him to drink a little. He cries to me and Keith please get me juice in my baby cup(sippy cup). He is breathing a little heavy and fast and he still has oxygen thru his nose and its running about 82 with it. We went to dinner while they did shift change so I could get out for a minute. He also begs me to hold him and he tries to get up .. best they let me do was get in bed with him. A nurse today told him the juice will help you get better .. its Ensure juice .... as he was drinking it he said to her .. it's working ... it's working .... aww. And now the night nurse told him he was a big boy and he says no im a baby ... she says big boys drink juice and you want juice so you are a big boy ... she says babies drink milk ...... he said ..... ok I want milk ... like a baby .. because Im a baby ..... uh attention all nurses .. reverse psychology doesn't always work on him.

Me in bed with him.

If Mommy says no ... ask Daddy

He is semi-awake off and on. Dr.M came and took out a wire and catheter was removed and one arterial line in his groin gone as well. He has been crying a lot and begging me for juice .. for a while he could not have any .. and he said .. I want it right NOW ! I said no and he then started saying .. I want Daddy !!  Finally he was able to have juice and he wanted to do it himself... he is restricted on how much he can have .. too much liquid can make his heart work too hard. He was offered soup and didn't want it and he got a  popsicle he called a lollipop .. he said he wanted to lick it. He also found scissors and they are just plastic to clamp lines with so they let him hold those for a while. Oxygen dipped into the 70's so they put him back on oxygen thru his nose ... which he keeps pulling out. He got another bag full of stuff from Amazing Hearts .. its the support group for heart kids at our hospital that I have only had time to go to once in three years .... and a coworker submitted for him to receive another gift from a nonprofit group called Emily's Smile Boxes  .. google them or look for their Facebook page .. she said we should get it this week! Also making more new friends here in hospital I hope to meet soon.

the scissors

Thomas

A wise woman once said to me ...

I am in several support groups on Facebook for the various conditions my family has and sometimes I just make the best connections. Another heart mom reached out to me recently and we became friends instantly ... she said ... lets talk and I will share with you some things another heart mom told her ... things she wished she would have known before her child had the Fontan....... so I call her the other night and I took notes. Well damn she was right on the money !! She mentioned how the child regresses around and after surgery sometimes .... Keifer has been doing that... and then the meds they are giving him in IVs right now they can cause him to moan a lot .... that started about 3am this morning .. about every 30mins to an hour he would moan loudly in his sleep and  cry out ... I want my mommy !! ... I would go hold his hand until he drifted back to sleep. The plan still this morning is to keep sedated .. they are waiting on surgeon to come in and remove a wire that is leading from his heart .. after that wire out ... then try to get him awake ... maybe water to drink .... and go from there. Thank you Jennifer for your information that was helpful and prepared me a little for what was to come and please thank the friend that told you as well. Thank you to everyone's continued encouragement for our family.... thanks to my mom for helping out with the other kids.

My view for the night ....

I am about to settle in for the night ... Im right behind his bed .. the pic is the view from my sofa bed... Im keeping warm with my long sleeve Trinity Trojan football shirt ..(sorry Bell haters) and so far has been very quiet .... Keifer is  in and out of sedation .. mostly out ... we need him to be still for a while ... he has already pulled out a tube in his nose that was there to open his airways .. he is on oxygen for now ... his oxygen sats are about 93. Tomorrow should be interesting .. they are going to try and make him get up and walk ..I expect screaming.... it is common they say but ... they have never heard his scream. We had several visitors tonight ... coworker and her husband and she brought me a beautiful bracelet she put together for me and cards .. thank you.  And Ms.Lisa came with her daughter and they brought each of us a bag full of treats including a Thomas blanket for Keifer ... thank you Lisa everything was perfect. I will try and get some rest.... no promises though. Check back tomorrow........