OCTOBER 31ST 2006

Haydan, who is now 3, is having his 'Fontan' surgery. He went in at 9am and we could see him at 5:45 pm in ICU,..a very long day indeed. Haydan's surgery went well and they were very happy with his hearts condition e.g: Pulmonary artery. In ICU Haydan has kept his nurse very busy, Haydan has low Calcium, Sodium, Potassium and blood pressure which is at 66/47. Haydan has high heart rate 170 beats per minute, his Oxygen Saturation is amazing at present, 95%. Haydan is still 100% and is intubated at present (machine breathing for him). The most worrying thing at the moment is his Lactate keeps rising, hence Haydan is having a blood test every 30 mins. High Lactos from my understanding means heart is finding it hard to pump oxygen around body. Haydan is on Melrinone, Dobutamine, Heparin, Sodium and Potassium. They have redone ECG and Echo and Haydan's heart appears ok.

P.S we are very grateful for max's place Heather and Tim, its so close to the hospital.

DAY 2 POST FONTAN

Haydan is doing good from the look of him. Each time he wakes up he looks better and better WHICH IS VERY EXCITING..Haydan was very distressed in the morning though for about 5 to 6 hrs, yelling and crying. Eventually he settled down though and nicely asking for ice or milk followed by a "more please" after finishing his 35 mils(35 mils per hour). He was keeping all of his fluids down until about 10 AM today, when he threw up twice. Haydans oxygen is not so good at the moment hence the nose plugs will stay in place for a few hours just in case his saturation drops. With .5 oxygen Haydan was at 95%. Oxygen Saturation. Haydan does not say much, but will ask when he wants something. No food has been eaten yet, he is not interested. His colour looks good to me and he was pointing out all the animals on the roof and walls last night. They are stopping his Morphine as I left today. Interestingly. ROOM 1 in ICU is now part of 7 west, and we were moved from ICU into room 1 today, making Haydan much happier.

On a funny side, the surgeon introduced himself to Haydan today, Haydan quickly said," I don't like you!!".....kids what can you do but smile

DAY 3 POST FONTAN

Its been 3 days since Haydan had surgery and he has been moved to 7 west. Haydan has been off and on oxygen quote a lot. At present he is off and his ox sat is around 87-90%. Haydan is not tolerating fluids and has drip for fluids, he won't try solids hence they can't give him Neurophine. He vomited all over the poor physio man and myself today, lovely, 3 times in total today. He is on heparin and was given Lasix and Captiprol and will begin the much talked about Walfarin tonight. Haydan is sleeping a good amount though and is relaxed. We just can't seem to get him to have food and he isn't keen to have too much fluids due to all the vomiting, but he did stand up today when they game him a little clean. Haydan is very pale and weak, but steady. Lets hope theres no more vomiting and that his oxygen levels settle. Love you Haydan xoxox

DAY 5 POST FONTAN

Haydan is a little better today, though he sleeping very little and constantly wanting the other parent as only 1 of us can visit him at a time. He vomited again this morning and doesn't want much food or water, having barely anything really. We are happy to say though that Haydan did his first 'no.2' in 6 days, after 3 doses of laxatives..and hopefully the air will be fresher now! They have delayed taking his wires out and of his drains are still in also. We are getting next to no sleep and are very surprised that Haydan does not want to sleep, nor does he want to talk to anyone. Its an absolute battle to get any drugs into him now due purely to all his vomiting and blood test are not fun, he now yells very loudly and repeatedly, "Go away i'm not your friend!!"..can't say I blame him.. Ox sats are still around 90-92% though, very exciting. He is also now on 10grams of Wafarin. His INR levels were checked today for the first time and it came out as 1.9. Unfortunately there is still no Physio as Haydan keeps vomiting when they arrive, hence they run.

Haydan is very sad and fretting, begging to go home. So upsetting to see, very upsetting...

DAY 6 POST FONTAN

It is the 5th November 2006, and now that Haydan is in 7 west he has truly blossomed. He is in a room with 3 older kids and has own TV. Mum or Dad can sleep beside him which now also which is making him a lot happier to say the very least, a new boy. He slept a little bit last night which was lovely and lucky mum also got some sleep too. Its fantastic, one minute after entering his new room and he has eaten more food than he has eaten in 5 days, he has also played and chatted a little and we saw some smiles, very exciting. The doctor's are keeping an eye on his chest drains as some of the fluid drained has separated, which can be a sign of problems. Haydan has had some temps, another vomit, but got out of bed today. We are hoping the wires will come out of chest today also. We have not been told his INR level as yet though.

Lets hope Haydan continues to be more himself, a very happy boy.

ONE WEEK POST FONTAN

Haydan had his INR (how long blood takes to clot-related to clots that may occur in arteries rather than outer of injury site i believe) test again today , it was 1.6 which is is a little low. When his results are between 2 and 2.3, Haydan is ok to come to accommodation with us. If his levels hit range tomorrow and Friday morning, they will do an X-ray to confirm no fluid is around the heart or lungs and we could be heading home late Friday next week. Oh yes and his drains were taken out yesterday also. I assisted with that then threw up when it was almost done.. I had to run so as not to do over Haydan and nurses like a goose! It started a trend in the room as 2 out of 3 others patients in his room vomited through out the night. Fantastic news though - Haydan and I slept 9pm till 730am, 10.5 hrs sleep , yeh baby!

I can't say enough about moving from icu to 7 west as Haydan is just so happy, laughing, playing, eating. Today fluid restrictions have become an issue, rather then me forcing him to drink, he is very keen to have lots and lots! We are on only 60%, 900mls a day, this includes all liquid in foods and drinks. Haydan still causes a scene with meds though. He also had his 1st bath and washed himself, the 1st time in a week today, thank goodness. He looks great, is moving great, and is happy wowwwww!

DAY 9 POST FONTAN

Haydan is off Heparin which means no wires, tubes or iv's hanging out of him anymore, he is free and very very happy. His oxygen saturation is still amazingly around 94%. INR test today result was 2.2, finally acceptable, hence tonight he is in accommodation. We are now at Ronald McDonald accommodation.

A huge thanks to Tim and Heather for Max's place accommodation, you're both so very kind to help others and it's very much appreciated.

Thanks also to Monique and Nathans (hlhs 4)visit, what a surprise for the boys. Nathan looked well and your kids are gorgeous. My apologies if i was in a fluster, we were moving accommodation at the time, hectic!

Haydan was 19.5kg when admitted and is now 18.3, he is on 60% fluids which equates to 900mls max liquid a day, this includes all liquids like jelly ice-cream yoghurt, milk, water etc, it is very very tough as he is always desperately thirsty..I even caught him drinking warm shower water god bless him..and when i turned shower off he licked shower screen! so thirsty!, the poor darling.

When Haydan goes home he will be on - Lasix Enalapril Wafarin and Spironolactone. Crushing and mixing is involved.. I feel like a junky getting it ready :/

Tomorrow we are to go and have MRI checked and an X-ray to check there is no build-up off fluid around lung or heart, and we hope to leave maybe Monday night, Tuesday morning depending on MRI and future X-rays.

10th NOVEMBER 2006 - DAY 10 HAYDAN POST FONTAN JOURNEY

We had meeting with a Wafarin specialist who went through all it's positives and negatives, and wow, its a serious medication.. But not quite as scary as i first thought. Haydan's INR today was 2.6 and x-ray looked great, we'll have a follow-up INR and X-ray to confirm all is looking ok, and then it's back home, yay. Haydan looks very pale but is happy and fun to be around, though he ask 100000 times a day for more drink, fluid restrictions of 60% i.E. 900mls is very very tough for him (and me).

DAY 11 - WE'RE HEADED HOME TO SYDNEY!

Haydans INR and X-ray were great. We are all very excited, especially Haydan, our superstar! 

 

     

 

Thank you for reading about our darling boy Haydan's HLHS Fontan experience.